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How can we make a supportive and educational programme for breast cancer patients who have finished treatment that is accessible to women from different ethnic and social backgrounds? Dr Judith Offman Intervention Research Manager, Breast Cancer Care Breast Cancer Care: a UK-wide charity We provide information and offer emotional and practical support at every stage We bring people affected by breast cancer together We campaign for improvements in standards of support and care Why is cancer survivorship important? • Approx ½ million breast cancer survivors living with breast cancer • Estimated to double by 2040 • Range of ongoing physical, emotional, financial and social needs post-treatment • Long lasting effects of treatment • Emotional impact of diagnosis Survivorship needs of all patients Fear of recurrence and uncertainty Changed relationships, role & identity Physical side effects Altered body image Loss of control Isolation Work & Finance Loss of self confidence Our Moving Forward services and information are for anyone living with and beyond breast cancer, helping them approach life after treatment with confidence Information Sessions Lingerie 1:1 Peer Support Evenings Moving Forward Course Best Foot Forward Moving Forward Resource Pack Helpline/Ask the Nurse Younger Women’s Forum Living with SBC Moving Forward courses Breast Cancer Care in partnership with local hospitals across Scotland, England and Wales What is it? 3-4 week psycho-educational course (half day) covering up to 8 topics chosen in partnership, for approx. 10-15 patients Partnership hospital provides: Venue, refreshments and speakers, promotes the course and refers patients Breast Cancer Care provides: Trained facilitator, set up and admin support, course materials quality monitoring, evaluation, signposting to other services Research Gap • What about women from ethnic minority groups? • What about socially disadvantaged women? • Are their needs same or different? • Large proportion of ethnic minority and socially disadvantaged women not using existing information and support services • How can we best deliver services for them? Patient Interviews Phase 1 of research project: carried out in depth interviews with breast cancer survivors from different ethnic backgrounds Ethnicity No of Women White 23 Black African or Black Caribbean 21 South Asian (Indian, Pakistan, Other) 17 Other 5 Total 66 Cultural and familial Influences Poor Knowledge & awareness of breast cancer PROWESS Study (Promoting Recovery, Well-being & Equality in breast cancer Survivorship) PROWESS programme • Supportive educational group based programme • For women who have finished breast cancer treatment • Specifically aimed to be inclusive of women from ethnic minority backgrounds • Co-designed by breast cancer patients, health care professionals and other experts • Will be tested in South East London Experience based co-design - in general Work with patients and experts delivering a service to capture and understand people’s experiences in order to improve future experiences Experience based co-design (EBCD) steps Gather experiences from patients and staff through indepth interviewing , observation s and group discussions Identify key 'touch points' (emotionally significant points) Create a short edited film is from the patient interviews Show film to staff/stakeh olders and patients, conveying patient experiences. Bring staff / stakeholders and patients together to work in groups to identify and design activities that will improve the service / experience Experience based co-design - PROWESS • Interviews (phase 1) with South Asian and Black breast cancer survivors informed 2 short films – One film of experiences of Black survivors and one of South Asian survivors – Actors used • Separate films and workshops for Black and South Asian groups to identify if need different courses for different ethnic groups or one course adapted to be more inclusive for everyone suitable • December 2013: Workshops for needs specific for Black African and Black Caribbean Design Workshops Short film presenting findings from phase 1 produced using actors Stakeholder feedback event: - Film: raise issues and patients’ needs - Overview of Breast Cancer Care’s support services - Discussion: Providing group based support: possible challenges and solutions Attended by 18 local hospital and community staff working with black women Design Workshops Short film presenting findings from phase 1 produced using actors Black African / Black Caribbean patient focus group event: - Film: raise issues and patients’ needs - Overview of Breast Cancer Care’s support services - Discussion: Providing group based support: possible challenges and solutions Attended by 20 Black African and Black Caribbean breast cancer survivors Design Workshops Short film presenting findings from phase 1 produced using actors BA / BC patient focus group event: - Film: raise issues and patients’ needs - Overview of Breast Cancer Care’s support services - Discussion: Providing group based support: possible challenges and solutions Attended by 21 staff and 22 Black breast cancer survivors together Stakeholder feedback event: - Film: raise issues and patients’ needs - Overview of Breast Cancer Care’s support services - Discussion: Providing group based support: possible challenges and solutions BA / BC patient and stakeholder focus group events to identify intervention content, setting and delivery Patient workshop attendee demographics -I Generational status 12 12 10 10 8 Number of attendees Number of attendees Ethnicity 6 4 8 6 4 2 2 0 Black Black Caribbean African Black Other White White and Black and Black Caribbean African Mixed Other 0 1st generation 2nd generation 3rd generation not stated Patient workshop attendee demographics - II Age Time since treatment 8 10 9 7 8 Number of attendees 6 Frequency 5 4 3 7 6 5 4 3 2 2 1 1 0 0 Under 50 51-60 61-70 71+ not stated 0 – 12 months 13 – 24 months > 24 months Workshop findings – Moving Forward content • Adaptation suggestions to make ‘Moving Forward’ content more culturally appropriate and accessible for Black African and Black Caribbean survivors Adaptations to Moving Forward ‘Moving Forward’ content Suggested additions and adaptations Lymphoedema Include advice on long distance travel to hot countries as may travel to country of origin Healthy Eating after breast cancer Include culturally relevant African/ Caribbean food and where to find healthy alternatives Understanding breast cancer treatments and managing side effects Adjusting and adapting after a diagnosis Include information on how to manage side effects on black skin, nails and hair loss and regrowth Emphasise that ok to ask for help, as black women may feel the need to be strong and get through it by themselves Include information on how to access group and one-to-one counselling Intimacy and relationships Take account of different family contexts, e.g. lone parents; taboo of talking about sex and sexuality Workshop findings – Target group • Mixed views whether the survivorship selfmanagement intervention should be solely for Black women. None would be put off by a group for women from mixed backgrounds, as long as their needs were met. Workshop findings – PROWESS programme design • Additional content: – Financial, benefit and employment advice – Information for carers and family – Information to challenge stigma associated with cancer • Cultural design elements: – Using community facilitators and experts – Culturally relevant healthcare/ educational materials – Involving breast cancer survivors from different cultural backgrounds • • • Neutral community setting: with easy access Importance of partnership working: Staff joining up expertise, resources and working together considered best to take the design and delivery work forward. Varied facilitation methods: – Including audio visual and talking and sharing activities – Less reliance on non-didactic teaching • Social interaction: Important as part of new group service will help nurture and build peer support and time to share with other breast cancer survivors. PROWESS programme design • Build on these discussions when codesigning PROWESS programme • Too many changes suggested to be able to adapt Moving Forward course • Will be new course • Not separate courses for different ethnic groups but one course inclusive of women from diverse ethnic and socio economic backgrounds and their needs. Next steps • Started consulting South Asian women to include their needs • Forthcoming EBCD working groups: with staff and survivors to further co-design and develop the new course Acknowledgments Breast Cancer Care Research and Development team Karen Scanlon (Head) Charlotte Tomkins Services team Programme Manager Patient Centred Care, Guys & St Thomas’s NHS Trust Catherine Dale King’s College London Jo Armes Emma Ream Seeromanie Harding All patients, stakeholders and NHS staff contributed The Big Lottery Fund (funding)